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Communication Before Speech

Hi! If you’re here, I likely crossed paths with you on some
FB page/message board/etc and sent you
this way. I sent you this way because I’m hoping that the information that follows will directly benefit your child (or grandchild, or friend’s child, or
cousin) by helping them communicate with those they love (and also, those that
they don’t love . . .you know, just everyone) before or while they are developing speech.
This blog is the story of my daughter Maya, who has complex
communication needs (and severe apraxia and an unknown genetic syndrome, if
that matters to you) and her journey towards communication. I made this page
because I found myself posting the same links repeatedly in online forums, and it made more
sense to consolidate them. (I've assigned numbers so that I can more easily
refer people to specific posts/information.)

1. Maya Finds Her
Voice: This is my kid. In the opening video clip, you can see that she
is adorable her communication is severely limited (she was 2 years old). In
this video you will watch her progress from more or less completely unable to
communicate to, well, being pretty communicative. Click here to see the video, which also
highlights a number of communication methods that we tried along the way (ASL,
PECs, a communication book, a popular-but-not-ideal communication app, and then a really, really good app).

2. An Open Letter
to Parents of Kids with Speech Delays:
This more or less says it all. If you have a child with significant
speech impairment, you really should read this and check out some of the links.
(If you’ve never heard of AAC, I’ll provide an introduction. If you’re rolling
your eyes because you already know all of this stuff, then the twitter and FB
feeds mentioned may be of interest.)
Children have the right to communicate before and/or while they
are developing speech. Click here to read the open letter.

3. I am not a
mindreader, and neither are you: If you’re thinking “well, that AAC stuff is interesting but we
don’t really need it. Luckily, I’m able to understand everything my child is
thinking and/or trying to communicate to me” . . . well, my reply is (get
ready, you’re not going to like it) “No, you probably aren’t.” Don’t get mad. Don’t get defensive. It’s just
the simple truth. I have been in your
shoes. I thought (or, at least, wanted to think) that I understood it all . . .
until Maya had a large vocabulary at her fingertips (literally) and started
telling my things that I would never have imagined. Click hear to read about how none of us are mindreaders.

4. What about sign
language? I don’t think that sign language is a good long term solution
for kids with complex communication needs (people get angry every time that I
say that, but it’s true). Here’s
why: First, most people do not speak
sign language, and I don’t think it’s fair for a child to have to rely on an
interpreter to speak to anyone (kids in their class, kids they encounter on the
playground, neighbors, new adults at school, a nurse in the doctor’s office,
parents at their friend’s birthday party, grandparents, etc.). What if your spouse had to translate every
word you said? Even if they did it perfectly, there is still an element of
isolation . . .a disconnect. Second,
sign language is a beautiful, complete language, but it is rarely taught to our
speech delayed children in that manner (parents and teachers usually focus on
functional language). Third, some children with complex communication needs also struggle with other fine motor tasks (besides speech) which make some signs difficult to form and challenging to understand (even by those who are fluent in sign). I do not hate sign
language, and we used sign language, but I think that
we’re fortunate enough to live in an amazing time in which technology can
provide our children with a universally understood digital voice . . . and that’s
the way to go. (Also, see this post: The Limitations of Sign Language for Children with Speech Delays)

5. My child is not
your child. Of course not. But
if you’re thinking of all the reasons that this might not work for your child,
here are a few rebuttals:

a) My child is too
low-functioning. We were told that
Maya’s cognitive functioning was in the 0.4th percentile. That means that of all of the 2.5 year olds
ever evaluated, 99.6 percent of them were higher than her, cognitively.

b) My child is too
high-functioning. I don’t want AAC to be a crutch that limits his speech
development. There is a bunch of
research that has shown (pretty conclusively) that not only does AAC not
hinder speech development, but it actually increases the rate of speech
development. Logically, think of it like this: I assume that you are able to
speak and to write. Imagine how frustrating it would be if one morning someone
put tape over your mouth and asked you to write your thoughts for the day
instead of speaking them. If a person is able to speak, they speak---it’s
faster, it’s natural, it’s easier, it’s FASTER (yeah, I said it twice). If
motor planning issues, anxiety, or other difficulties are blocking the ability
to speak, they have the right to a non-speech communication system. Right now.

c) My child is too
young. Really, they’re not. The same way you don’t wait to speak to babies
until they can speak back to you (you model speech constantly from birth,
expecting nothing in return, yet confident that they are learning from it), you
can start modeling with AAC right now. My son first started showing an interest in my
daughter’s communication device when he was only a few months old, and we gave him a device of his own at 17 months. You can see him in action here.

d) My child would just
want to play with an app, would exit the app, would stim on it and not learn,
etc. There are ways to lock other apps and there is evidence that stimming
and “playing with it” are actually valid ways of exploring and internalizing
language.

e) We already tried a
communication app (or device) and my child wasn’t interested. Was it too
limiting? Too simple? Did it contain stuff that they actually wanted to talk
about? Were they able to explore and find new words or were they limited to a
small number (by “small number” I mean anything up to only-a-few-hundred) words
that were preselected by someone else?
There are so many reasons that things could go wrong---and most of these
are not because your child isn’t interested in communicating. Try again.

f) My speech therapist
says that my child has to master pointing, or using PECs, or identifying
images, or picking from a field of two, etc before considering a more
complicated AAC system. Your
therapist is incorrect, according to current research and best practices in the
field of AAC. There are no prerequisites for using a robust AAC system.

6. But what about
PECs? PECs, or other picture
cards, are better than nothing, for sure. But there are several reasons that a
speech generating device (or app)---meaning that it actually speaks the word
selected---is preferable. Without
getting too sciency, there’s an actual neurological benefit to hearing the
spoken word after the button is pushed. Also, PECs fall apart when you get into
the hundreds-of-words range . . . it’s kind of self-limiting.

7. But THIS is what you really need to do . . . I find myself reading posts about 4 year olds who have 10 words, and when I start sharing information about how to provide them with a way to talk to their family right now, I get push back about other methods of targeting vocal speech that I "might not have tried, but they really work!" I would like to address some of these:

a) You probably need more speech! 2 times a week for 30 minutes isn't enough, you need to fight for more! We got my son 6 sessions a week and everything changed, now he speaks in full sentences! First, I am so happy that your child's speech issue has resolved. That's fantastic! But more speech therapy does not always mean that a child will suddenly start speaking. We had therapy 4 times a week through Early Intervention and twice a week privately, starting when my daughter was around 10 months old. Her expressive speech is still minimal compared to what she understands and wants to talk about. If you want more speech therapy, go for it, but also give your child AAC right now---communication shouldn't have to wait for speech.

b) Maybe you're spending too much time using a method of speech therapy that doesn't work with our kids. What you need to do is find someone who is PROMPT certified, immediately, and get in with them. PROMPT therapy is a total game changer and has totally changed our lives! First, I am so happy that you have found a method of speech therapy that is helping your child! Second, it doesn't work for everyone. We did private PROMPT therapy (which is typically very expensive, by the way) multiple times a week for several years----and while it wasn't a waste, it did not lead us to functional speech. If you want to pursue PROMPT therapy, go for it, but also give your child AAC right now---communication shouldn't have to wait for speech.

c) You need to go see Nancy Kaufman or someone at the Kaufman Children's Center. Her methods are what really work to cure kids who are apraxic. If you send her a video she will evaluate it and tell you whether you qualify to go for the intensive program, and it's the only thing that ever worked for my child! First, I am so happy that you were able to find something that worked for your child! Second, the Kaufman center is not an answer for everyone---especially some of the most severely apraxic cases (I went to a Kaufman training, discussed Maya with Nancy, and was directly told that she was too impaired to benefit from the Kaufman protocol). If you want to pursue the Kaufman protocol, go for it, but also give your child AAC right now---communication shouldn't have to wait for speech.d) Have you tried giving fish oil? When we started supplementing with fish oil our child's language exploded! First, I am happy that a supplement has been so beneficial for your child! Second, yes we use fish oil. Maybe it helps, maybe it doesn't, but it still hasn't suddenly made my child's expressive language comparable to her receptive language. If you want to pursue dietary supplements, go for it, but also give your child AAC right now---communication shouldn't have to wait for speech.e) My child also only had 10 words when he was four years old---we just kept doing therapy and believing, and now he's 16 and speaks totally normally! Keep believing, it will happen! First, so glad to hear that your child's speech issues have resolved. Second, for many (many) people it doesn't "just happen" if you "keep believing." If you want to just keep believing, go for it, but also give your child AAC right now---communication shouldn't have to wait for speech.

8. Who are you to
tell me what I need to do with my kid? I’m no one special . . . but I
believe in your kid. I’ve read what you’ve said about their unintelligible
language, or slow progress, or tantruming behaviors, or poor evaluations, or
how you wish they could tell you about their day or what they’re thinking, or something else that you said . . . and I recognize my daughter in your
stories, and I think about where we would be now without AAC. I believe in your
child, and I believe in all children with complex communication needs. I
believe that many of the professionals who work with our kids are misinformed,
and I don’t want you to believe their assessments of your child’s abilities
without question. I believe that society will condescend to, or write off a
child who can’t communicate, and I want our kids to surprise people and speak
for themselves. I believe that our kids have a right to
language before speech.

9. Ok, well now I
actually want to learn more about AAC . . . so what now? Check out the
links mentioned in the Open Letter (#2, above). If you’re interested in an app
for an iPad or android, I have strong feelings about the fact that all apps are
not created equally. This blog post highlights why the app Speak for Yourself(which is what we use) stands above the rest for many potential AAC users (if they can directly access an iPad screen). If you want to plug in to a community of AAC users, parents of AAC users, and professionals, the Speak for Yourself Users Group on Facebook is fantastic (and a bit of a misnomer, because the members use a variety of AAC options). This post speaks about how to get started with AAC, and this post is a collection of many resources about AAC and beginning communicators.

And lastly, if you want more information about something that I've mentioned here, or you want to argue with me, you can reach me here: uncommonfeedback@gmail.com You can also find me on Facebook at this link.

(Or, if you're a professional or knowledgeable AAC person who thinks I've overlooked some crucial common misconception, let me know what to add and I'll sneak it in.)

Thank you, thank you, thank you for sharing your expertise as a parent of a child with complex communication needs and current research in the field of AAC. As a SLP, I've encountered many of the issues you mentioned in your summary. I will use the links you provided to educate parents and to share with professionals who haven't made the switch to teaching a language system vs simply choice making. I appreciate all of the personal experiences and relevant information on AAC that you share on your page. Thank you and please keep them coming. I also love seeing the growth in your daughter's communication skills.

We use ASL and although I love it and Owen has learned a lot, it is limiting. He has tiny hands and fingers which make doing certain signs like letters nearly impossible. We are planning to get an iPad sometime this year and get the AAC program. In fact, we are only going to use the iPad for AAC and he will continue to use his Kindle for games, puzzles, and videos.

I'm a school-based SLP. I wish your blog was mandatory reading for every parent of a special needs child who could benefit from AAC. Then I wish it was mandatory re-reading every year or so when parents might fall into a slump/complacency. (I work with late middle-schoolers/early high schoolers, many of whom are new to their AAC systems). Maybe it would be best if they printed it out and swore an oath on it come to think of it.